Can biopsy come back negative?

[MiaBia]

My 6 year old daughter was diagnosed through a blood test. She has to go for a biopsy for further testing. Is it possible the endoscopy can be negative if her blood test was positive? Wishful thinking I guess. 

[trents]

12 minutes ago, MiaBia said:

My 6 year old daughter was diagnosed through a blood test. She has to go for a biopsy for further testing. Is it possible the endoscopy can be negative if her blood test was positive? Wishful thinking I guess. 

Yes it is. We see this occasionally and mostly with children. Their bodies are so resilient and their immune systems are not fully developed so the immune responses are not always typical.

[MiaBia]

3 hours ago, trents said:

Yes it is. We see this occasionally and mostly with children. Their bodies are so resilient and their immune systems are not fully developed so the immune responses are not always typical.

If it did come back negative, would that mean she doesn’t have celiac then? Even with a positive blood test?

[trents]

2 hours ago, MiaBia said:

If it did come back negative, would that mean she doesn’t have celiac then? Even with a positive blood test?

No, it would not necessarily mean that she does not have celiac disease. We do see this pattern sometimes with children who actually have celiac disease. And it does not mean that down the road she will not develop damage to the villi lining the small bowel if gluten is not withdrawn. It is possible she has NCGS (Non Celiac Gluten Sensitivity) but with the positive antibody test that is unlikely. As I indicated in my first post, perhaps there hasn't been enough time for detectable damage to have happened to the villi. And sometimes the damage to the villi is patchy. In this case, if the doc doing the scoping doesn't do a real thorough job and take a number of samples from various areas it can be missed.

Edited June 22, 2022 by trents

[MiaBia]

7 hours ago, trents said:

No, it would not necessarily mean that she does not have celiac disease. We do see this pattern sometimes with children who actually have celiac disease. And it does not mean that down the road she will not develop damage to the villi lining the small bowel if gluten is not withdrawn. It is possible she has NCGS (Non Celiac Gluten Sensitivity) but with the positive antibody test that is unlikely. As I indicated in my first post, perhaps there hasn't been enough time for detectable damage to have happened to the villi. And sometimes the damage to the villi is patchy. In this case, if the doc doing the scoping doesn't do a real thorough job and take a number of samples from various areas it can be missed.

Ok, I understand. Thank you for your response!

[trents]

It is recommended that when the scoping is done, the physician take several samples from both the duodenum and the duodenum bulb. Many will not be this thorough. But it's something maybe you should consider asking beforehand. Maybe a patter like this would be appropriate: "I've done some research on biopsy for celiac disease and I understand the villi damage can be patchy.  And so damage is sometimes missed. I learned that it is recommended that several samples be taken from both the duodenum and the duodenum bulb. What is your practice when doing biopsies for celiac disease?"

[MiaBia]

10 minutes ago, trents said:

It is recommended that when the scoping is done, the physician take several samples from both the duodenum and the duodenum bulb. Many will not be this thorough. But it's something maybe you should consider asking beforehand. Maybe a patter like this would be appropriate: "I've done some research on biopsy for celiac disease and I understand the villi damage can be patchy.  And so damage is sometimes missed. I learned that it is recommended that several samples be taken from both the duodenum and the duodenum bulb. What is your practice when doing biopsies for celiac disease?"

That is good to know, I will definitely ask! I plan on writing down my list of questions so I don’t forget anything. 

[Eileen B]

Hi MiaBia, I feel your pain. My 12yo tested positive in a blood test 3 weeks ago and we have his scope this Saturday. 

I asked his gastroenterologist  what were the chances of it being a false positive and he said 5%. Since then I got my other 2 kids blood tested and while they both came back negative one tested positive for the gene ( for some reason they only tested one of them for the gene and not the other!) so I’m now thinking it’s inevitable that the 12yo has it. 
 

the doc did say he would not diagnose him until he has all the biopsy results and they will take another 4 weeks. 
 

I’ll keep you posted!

[trents]

3 hours ago, Eileen B said:

Hi MiaBia, I feel your pain. My 12yo tested positive in a blood test 3 weeks ago and we have his scope this Saturday. 

I asked his gastroenterologist  what were the chances of it being a false positive and he said 5%. Since then I got my other 2 kids blood tested and while they both came back negative one tested positive for the gene ( for some reason they only tested one of them for the gene and not the other!) so I’m now thinking it’s inevitable that the 12yo has it. 
 

the doc did say he would not diagnose him until he has all the biopsy results and they will take another 4 weeks. 
 

I’ll keep you posted!

Are the other two symptomatic? A high percentage of the population have one or more celiac genes but most never develop active celiac disease. It takes a triggering event to turn the genes on.

[MiaBia]

53 minutes ago, trents said:

Are the other two symptomatic? A high percentage of the population have one or more celiac genes but most never develop active celiac disease. It takes a triggering event to turn the genes on.

If you only have the genes, do you still have to be gluten free to avoid triggering it?

[trents]

2 minutes ago, MiaBia said:

If you only have the genes, do you still have to be gluten free to avoid triggering it?

I would not think so. Gluten does not trigger the genes. But if the genes are triggered then gluten will cause inflammation. A common trigger is a viral infection but there are others. This is an area we don't know much about. But many autoimmune disorders are like that in the sense of having genetic potential that lies dormant until triggered by some stress event.

[MiaBia]

25 minutes ago, trents said:

I would not think so. Gluten does not trigger the genes. But if the genes are triggered then gluten will cause inflammation. A common trigger is a viral infection but there are others. This is an area we don't know much about. But many autoimmune disorders are like that in the sense of having genetic potential that lies dormant until triggered by some stress event.

That would make sense. Ever since my daughter was sick in December, she has had frequent belly aches. That’s what lead to the testing. 

[Wheatwacked]

Here is a clearly written explaintion of the genes in Celiac  Celiac Disease Genetic Testing.

My son had it at weaning. I had an acute attack at 63, but once on a gluten free, vitamin and mineral rich diet I counted 19 lifelong issues that cleared. See Scott's article link below. While it seems very hypochondriac to do in the case of celiac disease it is not. 

Find out what your son's vitamin D plasma level is. Sufficient is >30 ng/ml, but that is only to prevent Rickets, ignoring new research. My son's a lifeguard, he has low D. I keep mine at 80 ng/ml with 10,000 IU a day. Vitamin D modulates the autoimmune genes. A high enough level might dampen the autoimmune response.

"In particular, the emerging extra-calcium role of vitamin D and the increasing interest on its impact on the immune system and intestinal barrier permeability leads to its consideration as an important factor possibly involved in celiac disease onset."   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7231074/

 

Quote

A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;  ...He referenced various studies that have shown benefits of vitamin D on reduced risk for metabolic diseases, cancer, infectious diseases, autoimmune diseases, CV diseases, fractures, congestive heart failure and periodontal disease, to name a few.  https://www.healio.com/news/endocrinology/20120325/surge-of-information-on-benefits-of-vitamin-d-but-no-interventional-trial-data-exist-yet-to-ensure-s

 

 

Quote

Almost all people with celiac disease have specific variants of the HLA-DQA1 and HLA-DQB1 genes, which seem to increase the risk of an inappropriate immune response to gliadin. However, these variants are also found in 30 percent of the general population, and only 3 percent of individuals with the gene variants develop celiac disease.    https://medlineplus.gov/genetics/condition/celiac-disease/#causes

What Are the Symptoms of Celiac Disease?

[Wheatwacked]

One more personal note. Does he have a stuffy nose all the time? I was a mouth breather as a kid until GFD at 63. Now 90% nose. No allergies, nothing wrong to be found. Basically they told my parents not to worry. Maybe he'll grow out of it. It was the wheat for 63 years!

Might be worth making the whole family GFD.

Edited June 24, 2022 by Wheatwacked

[Eileen B]

On 6/23/2022 at 7:42 PM, Eileen B said:

Hi MiaBia, I feel your pain. My 12yo tested positive in a blood test 3 weeks ago and we have his scope this Saturday. 

I asked his gastroenterologist  what were the chances of it being a false positive and he said 5%. Since then I got my other 2 kids blood tested and while they both came back negative one tested positive for the gene ( for some reason they only tested one of them for the gene and not the other!) so I’m now thinking it’s inevitable that the 12yo has it. 
 

the doc did say he would not diagnose him until he has all the biopsy results and they will take another 4 weeks. 
 

I’ll keep you posted!

Just out from our scope and dr confirmed he is def coeliac

[trents]

10 minutes ago, Eileen B said:

Just out from our scope and dr confirmed he is def coeliac

Well, that takes the "what if" out of it now. Now it's down to the challenge of learning to live a gluten free lifestyle. What will you do when she's invited to birthday parties? This might help you get started: 

Unless everyone in the household eats gluten free while in your own home it can be a real challenge to prevent cross contamination. And there is at least a 10% chance that other first degree relatives will have or develop celiac disease so think about testing for the others. At least be on the lookout for the start of symptoms. A recent large study done by the Mayo Clinic found that 40% of first degree relatives had celiac disease. Many who have it will be asymptomatic in the beginning stages.

[Wheatwacked]

The most important step now is helping your son find foods he likes and will choose over wheat, barley and rye. In the beginning the hardest part is breaking the old eating habits. Wheat is addictive, so there will be strong cravings. There will be peer pressure on him. Hard boiled eggs, Fritos, Cheese Doodles, Potato chips, ripe bananas, Snickers, almost anything not in a box or bag are good choices. While "eating healthy" is important for at least the first thirty days it is more important is to focus on not eating gluten. It is generally accecpted that it takes 28 days to create a habit. Plenty of protein to help rebuild and repair. Watermelon, let him pig out on it. With luck the other kids will start to envy his lunch box.

While healing there will still be malabsorption so a good supplement to enhance his vitamin and mineral intake will speed his recovery. I was lucky with my son as an infant he ate only Nutramgen Infant Formula and from there to gluten free, but by 5 years old he was sneaking bread.

To me it seems that most of the people spreading warnings of too much vitamins are Wheat Eaters. The danger of Hypovitaminosis (malnutrition) is much more imminent with your son than the slim possiblility of Hypervitaminosis.

When you stop eating wheat you lose the fortifications added like folic acid, Beans are a good alternate. Don't worry about weight. Without the wheat urging to eat more carbohydrates, his body will find its own optimum.

In the end, getting a definate diagnosis of Celiac Disease is a good thing. Years of "why do I... will be avoided in his future and he will grow to be strong and healthy like mine. 🏄‍♂️